02/27/2026
Tomorrow is Rare Disease Day, and Aveanna is proud to spotlight and support our patients who live with rare diseases.
Eight-year-old Axel lives with Metachromatic Leukodystrophy (MLD), a rare genetic disorder that affects the nervous system. Since he was diagnosed with MLD in 2020, Axel has become fully dependent on his family and nursing team for care. For his mom, Lexi, joining Aveanna meant finding the specialized care her son needed after years of visiting specialists and balancing the responsibilities of her family.
"Aveanna’s team has been absolutely amazing for Axel," said Lexi. "I cried when they had a nurse ready to start with us on Christmas Eve because I finally felt like we found the missing pieces of our village to help fully support Axel’s needs."
Lexi feels as though a boulder has been lifted off her shoulders with the help of her Aveanna team. With Nurse Crystal able to monitor his breathing, medication, supply orders, and functioning, Lexi can rest assured that Axel is safe while she raises her other child and tends to her own needs.
"Having nurses in our home, part of our family, supporting Axel like I do means I don’t have to be 'nurse' anymore, I can just be 'Mom,'" said Lexi. "That is all I have ever wanted, and now it is a reality for us. We couldn't be more grateful."
This Rare Disease Day and every other day, we celebrate the unique journey of our Aveanna patients living with rare diseases. Thank you for opening your hearts and homes to our care.
[This information has been shared with permission from the patient's family.]